To be angry with Justine Roberts

[T1mum3]

For saying on Jamie Oliver's facebook live chat that we should tell children in primary schools that they will lose a limb due to diabetes if they don't eat right? I'm angry because amongst primary school age children in the UK 5355 have Type 1 diabetes, and 7 have Type 2. Type 1 is autoimmune so not related to lifestyle.

All those kids will be fighting day and night, taking around 6 injections a day or wearing an insulin pump (putting a cannula in every two days), pricking their fingers 10 times a day and counting every single morsel of carbohydrate that passes their lips to try and keep themselves well enough to go to school and take exercise. They don't need to know about amputations yet.

99 per cent of children with diabetes have Type 1. They are made more vulnerable to bullying everyday because of the obsession with childhood obesity.

Anyone who hasn't got the message about healthy diets and kids yet obviously needs some kind of intervention. Type 2 diabetes is a huge and growing issue. But making diabetes and amputations into a boogy man to scare small children is disgusting.

I found your photograph very moving OP. Your family must be exhausted from this all night every night.

I was diagnosed with type 1 aged 10 and knew amputation, blindness, etc were risks from the beginning. I don't remember being particularly terrified, because I knew I could do something about it.

I've seen far too many diabetics, of all types, burying their heads in the sand and refusing to take medication or make any changes. There's no one-size-fits-all approach, but I don't think downplaying the risks is helpful.

ZoeTurtle - it's good to hear that it worked for you, and I agree with you that there's no one-size-fits-all approach. Nobody is saying that the individual shouldn't be told the facts at an appropriate time for them - we're going to have to. But using complications as a tool to scare little children who don't have control of their own diets is different to the very difficult conversation to be had with young people with T1D.

My DS has been stuck over 12 mmol for most of the day despite around 7 corrections (extra insulin doses) and four different temp basals (increases to his background insulin on his pump). No ketones thankfully. All carbs (and some fat and protein) bolused for (i.e. normal ratio of insulin given). Maybe he's fighting off a cold virus, maybe it was the English test this morning, maybe it's because I added a teaspoon of tomato puree to his usual breakfast of eggs and peppers, maybe he's growing. If he'd had to deal with the stress of knowing that "diabetes makes your limbs drop off" I don't think that would have helped him today.

He's actually one of the better off ones as his HBA1C (3 monthly blood test) was in the target range. 95% of children with T1D in the UK don't meet that target. Part of that has got to be down to the lack of availability of advice, technology and education. Only 25% (one quarter) of children over 12 with T1D get the care checks (kidney function, eyes, etc) that they are supposed to, meaning that for 75% complications won't be caught early. Under 12s like my son don't get the care checks in our area and don't have to under NICE guidelines. And they are perceived a "drain on the NHS." It really stinks.

T1MUM3 - we did have a good clinic - hba1c of 45. I have promised eldest new skate shoes as a reward (smile).

Consultant suspects we're still in honeymoon as nearly 2 years in but have good control - largely I think due to the libre.

We are very lucky that the care in our area is great for children with diabetes. I am also lucky that generally school has been good so my child has been on 2 foreign trips and done some boarding and the school are great at dealing with him.

I very much doubt Justine will ever come back to this thread. She felt her apology was sufficient clearly.

45 - way to go!! That is brilliant. I want a trophy emoticon but it will have to be a gold

Yes, I think you are right about Justine.

As the press manager, and a trustee, of registered charity DWED (Diabetics With Eating Disorders) I am banging my head at frustration at Justine's remarks.

I was diabulimic (withholding insulin to lose weight) for a couple of years as a young adult - I was diagnosed at 11 years old. I'm in recovery for almost 10 years.

We know, in DWED, that remarks such as Justine's compound the guilt and shame felt by diabetics with disordered eating and set back recovery that bit further.

Two 'scare' incidents in particular stick out for me in my medical history - the consultant when I was 19 who theatrically picked up the phone the minute I sat down in his office, and said "That foot will have to come off" to the nurse or whoever was on the other end. I was scared and just disengaged completely from the service, didn't attend an appointment for two years.

The second was the ophthalmologist who, when I was 23, told me I'd probably be blind by 30. I had what they call 'background' retinopathy, nothing proliferative. The damage that woman did to me I will never forgive fully. For a year I slept with the lights on, because I'd wake up and panic at not being able to see. I thought obsessively about how I wouldn't cope being blind, and googled suicide methods. It triggered a massive episode of anxiety and depression.

I'm still not able to relax about eye appointments, but I'm a lot better these days, after doing a lot of work on my mental health.

The other bitter point is that it's fifty-fifty whether you will be told that if you do indeed have high daily blood glucose, it is extremely important to bring it down into range slowly and gradually. To do so fast means the risk of eye damage rises considerably. No doctor told me this when I was first kicking my eating disorder at 22.

Scare tactics don't work. They especially don't work with someone who already has diabetes - they feel helpless and like they're fucked already, and that means a loss of hope that you can ever be well. That loss of hope is INCREDIBLY dangerous.

Making remarks such as these means you are riding roughshod over the wellbeing of children and teenagers who already have diabetes - you are simply saying it doesn't matter that you are whipping up their fear and distress. All for some fallacious pro-health message.

For shame, Justine.

Around about this time each year, there will a flurry of threads from people who can't afford to heat their homes in winter and afford to buy food.

Yet Justine's claiming that children aged ten and above control their diets?

As for the "bankrupting" the NHS nonsense, gov't underfunding is achieving that aim.

Headofthehive55 sorry for the delay in replying, also sorry for going off on one

The Nottingham research group UKCTAS are actually very good and there are researchers there who I have a lot of respect for. Look at what they are publishing though. There's not much there about scaring or shaming smokers into quitting (because it doesn't work). In fact, most of their recent statements on smoking have been about the potential of ecigs and how to remove obstacles to people switching from smoking to vaping. See for example their excellent rebuttal of the latest WHO ENDS report.

It hasn't always been this way though. UK PH acceptance that vaping is part of the solution, not part of the problem, has only really happened in the last 18 months - 2 years. A lot of vapers (i.e. people who have successfully quit smoking using this new technology) still have sore heads from banging them against a brick wall trying to be listened to by public health for the last several years. UK public health is light years ahead of the rest of the world on this issue too, including WHO, which affects every country's strategy for reducing smoking and related harms, especially poorer countries which do not have the means for their own fully developed public health research and policy development. Most of PH worldwide are still not listening to smokers and what works for them. This urgently needs to change.

It's not good enough to celebrate success in the 1980's and ignore the fact that smoking rates have barely shifted in the last decade. Certain 'tobacco control' measures worked well in the past when there were a large proportion of smokers who weren't actually that badly addicted. These were the 'low-hanging fruit' who could be scared, shamed or taxed out of smoking relatively easily. We're in a completely different situation now and we need to listen to smokers and ex-smokers about what works.

There isn't much correlation at all between the amount of tobacco control measures (taxes, bans, scary ads, health warnings etc.) a country adopts and its success at cutting smoking rates.

Apologies for the massive derail OP. I think wider public health could learn a lot from the example of smoking, tobacco control and harm reduction though.

Just had to come back to this thread, to re-read, and consider my posts on it.
I am happy to stand by everything I wrote.

Personal? Asking someone to comment/stand by what they have said in public? I think that is reasonable.

And unhappy that this thread has been linked in with the other personal/attacking MNHQ/ disablism thread.

*MummyLikesWrapMusic
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Junk food is FAR more expensive than 'normal' food. Your snide comments regarding quinoa and the connotations you are suggesting regarding those who have got their shit together who have a higher income are offensive. Learn to cook and take some responsibility for goodness sake.

SO tired of people refusing to be accountable for feeding their children crap.

No, it really isn't.

SoMuchRoomForActivities

Perhaps you're offended because you have no idea of the real world, that those living on the breadline can't afford the healthier choices or the gas/electric to cook things from scratch. As pointed out, it is a lot cheaper to buy big bags of processed nuggets and burgers that cook within twenty minutes.

So tired of those patronising twats with 'their shit together' thinking they know how the other half live.

Oh, and I do cook from scratch and make 'healthy choices'. I've also lived in near poverty, you bloody eat what you have and believe me, you don't give a shit what people like Jamie Oliver thinks, or how offended you are about quinoa .

I've just found this thread and read it all.

Thank you for an informative and intelligent thread. I have learnt a lot.

It's only recently that I've known anything about diabetes and that's because a workmates 9 year old DD was diagnosed T1. To say it is time consuming is an understatement. To say his DD is severely affected is too. I remember the story about her being afraid to go to the school toilets by herself because she passed out in one and it was a while before she was found.

He would often interrupt meetings when she texted him what she had eaten so he could calculate how much to inject herself with and text her back. He said he spent hours reading food labels in detail.

Anyway, it seems that technology is having huge advances. My friend quit his job to set up a business making a handheld scan and app which gives nutritional information about what's on your plate. They're also currently working on a pocketsized Bluetooth scales to get as accurate as possible. They've won several innovation awards.

Anyway, I won't name them as it's not the point of this thread , but I just wanted to give a bit of hope that things might get easier to measure at the very least.

The warning about teenagers rebelling is very worrying. My friend was warned very early on about this risk. [hugs] to all those combatting this disease.

Diabetes day 2016

This thread started out with me feeling quite angry, but I've been so overwhelmed with all the support on here. As Oblomov says, it's World Diabetes Day today, so just wanted to share a guest blog I've done for the day www.pushingthemoon.com/bloggers-spotify-playlist-world-diabetes-day-special-featuring-rachel-good/

At hospital earlier, saw this as part of their Diabetes Day display.

This is my 9 year old's number after 15 months :( I think the finger pricks is an underestimate :(

That's so clever OP.

I've had diabetes for over 15,000 days. Lord knows how they'd calculate how many hours I'd spent recovering from hypo's. Let me give you a clue. Lots.

Give it a go Oblomov jdrf.org.uk/get-involved/the-diadigits-calculator/

Wow - 15,000 days, more than 40 years.

Crikey - a little education goes a long way - goes both ways I'd say. Making sweeping statements can be incredibly damaging.

If it's not enough already that huge swathes of people in poverty are being blamed for the country's ills, they are now going to be judged for killing off the NHS too. I'm sure when they go to food banks for their food, just picking up something to eat that will last well is foremost in their mind (regardless of whether it's full of preservatives and additives to make it last longer, and lacking in the nutrition that fresh foods provide). I'm sure they'd love a healthy selection of 7 a day fruit and veg that is currently recommended. Unfortunately, that's not what's mostly available.

The foods that last longer are ones that are full of sugar - sugar is one of the best preservatives around - along with salt. Or, they are very starch/carb heavy because they dry better or last better (pasta, rice, flour, potato) - and we all know carb-rich foods convert very quickly into sugar too. These starchy foods are also cheaper.

OP I've learned a lot on this thread. I share your view on the common conflation of T1 and T2. I've also been reading your blog and think it's excellent. 2 of my good friends have children with T1 so I've shared your blog with them. Thank you!

Thank you oven chips, that means an awful lot.